Mick n Ang

Ang, I do not know whom to trust. 4 different people have told us 4 different things. The latest, yesterday, a rep from a company that provides feeds/pumps. She suggested we keep the tube unclipped (little white clip, not the tab) when the tube is closed. Hospital told us to keep it clipped. ???

My mum is coming from abraod to stay over Christmas as this is really tough time for me because Stan's nursery is closed and it is impossible to see to both lads even with 4am start and midnight as bed time. Hoping for some family time. Hope you enjoy it too. Dani

Hi,

I just clean around the area, the opening in the skin where the tube goes in. And rotate 360. Is the white tab very close to his skin? It was too tight on Laurence and it was moved away from the stoma/opening. Now it is about 1cm away from the skin. No amount of cleaning and drying willl help if there is an infection. I was very particular with cleaning and still it got infected. They kept saying 'stomach juices' while all along it was an infection.

Guess what, the district nurse said today that he DID have an infection before, when she took a swab. If no better may be worth asking for a test . D

Hi, it was always red and looked inflamed but health professionals thought it was not that bad when we asked to be looked at. Since he had been on antibiotics for pneumonia it has completely healed. But I am not certain it would stay that way... Take care, Dani

Hi Ang, yes been here a while now but mostly look at whats going on, i dont have as much to say on here as the other one lol.

Hey, so good that you have found a solution. So glad. Bet the hospital wouldn't have hit on it. It takes a determined cals!! Glad Mick's a happy chappy. Hope you get a little more sleep now too.

Yes I can totally understand trying to resolve it without going into hospital. Mum was a bulbar onset & keeping her mouth closed just wasn't an option. The mask she had went from just over her eyebrows to her chin. I understood from the folks we hired the bipap off that it wasn't the most typical mask but the respiratory nurse thought it the most comfy and effective. She looked like darth vadar with it on but we never had skin issues with it as there was give round the sides. Don't know who made it cause there was no name on it but do know they come in 2 sizes. Small is for children & large is for adults. On your idea with the hose, definitely worth a try wouldn't you say? We got a tip from Rose which was to cover it. There are insulators which you can get but I just used the bedcovers. Mum seemed to think it improved things. On the lack of sleep-total sympathy & I hope you're able to find a solution that leads to rest for both soon

Hi,

saw you post - water in nasal pillow mask/had this problem and resolved it by:
1/ turning the humidifier down to 1 (from 3)
2. buying a cover for the big hose, like this one: http://www.cpap.com/productpage/snuggle-hose-tube-cover.html?gclid=COTgpY3fxKoCFcRO4QodwUEn5w

It is all to do with the room temperature and condensation but can be dealt with.

Hi Ang, saw your post about water in nasal pillows. We used a full face mask so no experience of the pillows but just wondering if the temperature of the humidifier water could make a difference. We had a bipap sychronicity & could adjust the temp. We found putting the humidifier over a radiator before slipping it into the machine to help also. All that said there was often some water drops in the mask by morning so this might not be the answer you're looking for. Hope you're both doing ok xx

Thanks for your good wishes. He may come out on day release on Sat and Sunday, and then go in on Sun evening for Monday suregery. They did all the tests and it is now just the matter of inserting the tube under sedation...Ward at Wythenshawe is grim though... Hope Mick has adjusted to bipap. Dani

D not F! : )

Hi, good to hear that. You will get adjusted. L too uses nasal pillow mask. When they talk about 'imprivement' in levels they mean O2 and C02 (blood gasses). FVC continues to drop as muscles continue to deteriorate. Take care, F

Hi there, sorry for a late reply. I have been away with Stan.

Laurence was in the hospital Fri - Monday. He was very keen to adjust to NIV fast and was open minded. One needs to be relaxed about it as the mask and the air blowing can make the person claustrophobic. He has been using it since Feb. His FVC continues to drop but not at the same speed. As for energy levels - I am not sure, he was not particularly tired before NIV, but his sleep was interrupted (due to build up of CO2). If you need more info do contact me. Dani

cheers to the lovely duo...keeps good as poss..johnno

Hello. Hope all is ok at your end. We are now in the bugalow full time and it is much easier (no stairs). Laurence is testing out a wheelchair, still using a walker around house, scooter outside. Take care, Dani